Support for parents
As parents, we all want our children to be happy and healthy, and finding out your child has a long-term condition such as XLH can feel like quite a blow. It might leave you anxious and unsure how best to help e.g. what treatment will they need? How can you help them manage their condition?
Even if you have XLH yourself, and were prepared that your child may have it too, it doesn’t always lessen the feeling of worry when it happens.
Whatever your worries, try to remember that help is at hand; and although the thought of managing your child’s XLH may seem overwhelming at first, there is support and guidance available.
Nearly seven out of ten cases of XLH occur due to a parent passing the condition to their child. If you are familiar with XLH, it may be hard to cope with the idea of your child suffering from some of the worst symptoms.
Try to remember that every case of XLH is different, with a different pathway and separate outcomes, so your child’s experience may not mirror your own.
In approximately one third of diagnosed cases, XLH has occurred spontaneously. This means it hasn’t been passed on to a child genetically, and neither parent has XLH. If this is you, it’s likely that you hadn’t heard of XLH before your child was diagnosed. Parents of children who are spontaneous cases can feel especially anxious after diagnosis, and unclear about where to turn.
Rest assured that there are experts out there who can guide you through different phases of your child’s development, and there is plenty of support available.
Watching your child undergo treatment for any condition can be difficult; but studies have shown that the earlier your child is diagnosed and treated for XLH the better the likely outcome for them.
There are experienced professionals who are trained in taking care of children and parents
Be reassured there are experienced professionals who are trained in taking care of children and parents throughout your treatment journey. So, you are not alone, there are many others who you can lean on for advice and support.
Your child will probably need regular blood tests to enable healthcare teams to keep a close eye on how the medicine may be working. Doses may then be adjusted to ensure your child receives the best care for their particular needs.
Your child may need to have ultrasound scans to monitor kidneys, or X-rays to check on the development and condition of their bones.
Children with XLH can also struggle with abscesses and dental cavities, so you may need to visit the dentist regularly.
Although this may seem like a lot of tests, having this information enables specialist doctors to build a clearer picture of your child’s progress, meaning they can tailor their care more effectively.
If bowing does not correct, your child may eventually need orthopedic (bone) surgery. This surgery can involve “stapling” the bone. This allows the growth on one side of the bone plate to catch up with the growth on the other side. Osteotomies are another type of surgery that involve cutting the bone and then the healing achieves realignment. Your child’s specialist doctor may discuss this with you if they think it is an appropriate option for your child.
Supporting infants and toddlers
Helping them to understand
As XLH is a complex condition, it can be difficult for young children to understand their illness or the medication they need to take.
As XLH affects bone growth and strength, it may be that your child begins to walk a little later than some of their peers, or struggles a little with mobility. For some children, this may be frustrating, so it’s important as a parent to provide reassurance and comfort as they progress.
Taking their medicine
Often, children are prescribed phosphate supplements, which need to be taken several times a day. This medicine has an unpleasant taste and, because it’s fizzy, can feel strange in a child’s mouth. Parents may struggle to convince their children to take the medicine for these reasons.
Convincing an infant to take a medicine several times a day is tough. To make things easier, it might be worth creating a story or game to encourage your child and aid their understanding. Perhaps give them a small reward, such as a star on a special chart to give them a sense of achievement after every dose. Getting your child on board will make life with XLH much easier.
TIP: Some parents have reported difficulties in using traditional infant sippy cups containing the medication as the fizz can literally pop the lid off – so it might be an idea to try a cup with a screw-on lid.
TIP: Phosphates may make your child feel thirsty. Ensure your child is well hydrated while prescribed phosphates and calcitriol.
Bumps in the road
Frequent medication, hospital visits and tests can take their toll on the strongest of us, so it’s hardly surprising that your child may experience treatment fatigue as a result of their treatment. Make sure you talk to your child about how they are feeling, and see whether you can introduce things that make visits fun, as well as explaining why their treatment is so important.
Some children also develop anxiety or even needle phobia as a result of frequent blood tests. However, there are ways to improve the situation. If your child is afraid of the pain associated with needles, it may be worth discussing using anesthetic cream before a test.
Other techniques such as distracting your child during the test might be useful. Ask whether your child can sit on your lap during the test, and encourage them to cry if they feel they need to – they may find it easier than trying to be brave.
Make it fun
Try to reduce stress and anxiety by dealing with any medical appointments with as much humor as possible. Make hospital trips more fun by giving your child a treat afterwards – for example, buying a comic, or visiting a favorite park. Talk about your plans during appointments – for example, deciding on which comic to choose and talking about your child’s favorite characters. This will help your child to forget their struggles and focus on what’s next.
You may also find reading your child stories in which their favorite characters have medical appointments will help them to realize that medical appointments are a normal part of life for many people.
As XLH is quite rare, it is likely that staff at your child’s school will not be familiar with the condition and its symptoms. However, schools often have pupils with a wide range of medical needs and staff should be equipped with knowledge and understanding that will help. If you do experience problems, try contacting the overseeing authority for your school: the governing body, local council official or government education department, as appropriate.
Try to arrange a meeting with key staff involved in your child’s education to explain how XLH affects your child. This will reduce any stress involved on both sides.
As medication may need to be taken several times a day, your child may need to take it at school. Rest assured, they will not be alone – many children, for example, those with asthma, need to visit the school office/nurse to take their medication, so your child need not feel different.
Making things easier
Talk to your child and see if they have any specific worries about school. Then see if you can come up with ways to make it easier. For example, it may be possible to take medication in a staff room or school office away from other children.
As your child grows up, they may notice the ways in which they are different from their friends. These differences could be to do with physical appearance, as their legs may develop ‘bowing,’ or their ability to join in with sports or at playtime. It is also possible that your child will need to wear leg braces for a time, which may cause them to feel self-conscious.
Even if physical appearance is not an issue, your child may begin to question why they have to take regular medication when their peers do not.
Generally, children with XLH should be able to participate in the same physical activities as their peers, so encourage your child to join in as much as possible.
Get written advice from your specialist about activities your child can and can’t participate in. This will help teachers to include your child as much as possible.
There are many activities your child may enjoy that don’t involve running around. It might be worth introducing your child to music classes, encouraging them to draw, paint or play simple board games – this will give them a wealth of fun activities to draw on.
If your child is worried about how they look, reassure them that their medicine and other treatments mean the appearance of their legs may improve over time. Remind them of their positive attributes – both physical and emotional – and help them to express their individuality in different ways – perhaps with a fun hairstyle or by allowing them to choose their own outfits.
Dealing with bullying
Whether it’s the colour of their hair or their ‘funny’ name, having any kind of difference can leave children exposed to bullying. But having XLH doesn’t mean that your child will be bullied, even if you have XLH and were bullied as a child.
If you are worried that your child might be being bullied, make sure you talk to their class teacher. Schools are used to dealing with and supporting children in this situation and will be well equipped to help.
Talking to staff at an early stage will help to address any difficulties that might arise. You may also find it useful to keep a two-way diary with your child’s teacher, enabling you to communicate any concerns quickly and effectively.
Sometimes, simply talking to your child can help, so make sure they know that you are always on hand to listen to any worries.
A friendly chat
If your child is particularly affected by bullying, or the other difficulties of XLH, counseling may be beneficial. This could enable your child to deal with the negative impact of their bully’s behavior, and any self-confidence issues that may arise.
What to do in an emergency
Depending on the severity of your child’s XLH, it may be that you will have to deal with an emergency situation from time to time. The most common of these would be a broken bone – as XLH patients are more likely to suffer fractures – or an increase in the severity of pain.
Sometimes children are unable to tell us what is wrong, so keep an eye out for any changes in behaviour, or anything out of the ordinary. Children sometimes complain about tummy pain, or are unable to explain exactly how they are feeling, so if you are in any doubt, seek advice from your family doctor.
If your child’s pain is severe, it may be best to seek emergency treatment as soon as you can.
Speak to those involved in your child’s daily activities – such as teachers, childcare workers and family members – about possible risks and make sure you have a plan in place, and phone numbers on hand.
As XLH is quite rare, it might be necessary for you to explain your child’s condition to paramedics or emergency medical staff to ensure they are treated effectively. In an emergency situation, should one arise for any reason (connected or not to your child’s XLH) you may feel too stressed to explain properly. It can be helpful to write down useful details that you can use should an emergency arise.
Finding support for you
Having a child with medical needs can be tough, and it’s likely you’ll feel overwhelmed at times. But as a carer, it’s important that you don’t neglect yourself – either physically or emotionally.
Make sure you take some time out for you from time to time – perhaps a relaxing spa day, or a visit to friends – to help lower your stress levels. Don’t feel guilty about taking time for yourself – reducing your own stress and tiredness will mean you’re more able to care for your child.
Connect with others
Discussing issues with other parents and medical professionals can enable you to share concerns, and help you to feel less isolated. You may also find it useful to join a support group where you’ll be able to connect with other parents and sufferers with similar experiences. Please check the resource section for patient associations in your country.